Politicians and doctors are calling for the Federal Government to address genetic discrimination in life insurance. People with a family history of cancer or illness are reportedly avoiding genetic tests due to concerns that life insurers will discriminate against them.

“Ongoing discrimination is taking place, including insurers in some instances breaching their own moratorium by requesting DNA results,” Independent ACT Senator David Pocock and Kylea Tink MP, Independent Member for North Sydney, said. “This practice is stopping people from undertaking testing, even when it may be clinically indicated.”

Genetic testing checks DNA for variations and mutations, some of which can cause medical problems or increase the likelihood of developing diseases. Identifying these variations and mutations can lead to life-saving intreventions.

However, a recent report from the University of Monash found Australians are worried about the impact this information can have on life insurance prices.

Monash’s A-GLIMMER Project – funded by the Commonwealth Government – investigated the effectiveness of the life insurance industry’s self-regulated moratorium as a regulatory solution to genetic discrimination.

The moratorium requires applicants to disclose genetic test results only for death and total permanent disability policies above $500,000, and encourages life insurance companies not to request a person’s genetic test results for policies under that figure. The moratorium also applies to trauma and critical illness policies greater than $200,000 and monthly income protection of more than $4,000.

However, Monash’s report found that the moratorium was “inadequate to address and prevent genetic discrimination in life insurance”. It found instances where insurance companies asked about genetic testing contrary to those thresholds, and flagged concerns about how the agreement was enforced. It recommended replacing the moratorium with a legislative model of prohibition.

The Council of Australian Life Insurers (CALI) advocates for a ban on the use of genetic test results in insurance underwriting.

CEO Christine Cupitt said that federal regulation would ensure people were not discouraged from undergoing genetic testing; the industry had never compelled genetic testing for underwriting purposes, and supported “strict regulation on the use of genetic test results in underwriting, with limited Government approved exclusions to guarantee fairness for all insured Australians”.

The Life Insurance Code of Practice, CALI said, reinforced that life insurers would not request or encourage genetic tests, regardless of the amount of cover; and that once a person has life insurance, future genetic test results need not be disclosed to their insurer, and would not affect their level of cover or premiums. Most Australians with life insurance, around 15 million people, obtained coverage without disclosing genetic test results, and accessing affordable life insurance through superannuation remains unaffected by genetic testing concerns. When someone disclosed genetic test results to a life insurer, it often worked in their favour, indicating a reduced risk of a genetic condition; in more than 80 per cent of cases, it did not affect the underwriting decision, and had a positive impact in 14 per cent of cases.

Senator Pocock and Ms Tink, however, fear that the limited Government approved exclusions that CALI proposes would leave the door open for governments to permit discrimination against certain patient cohorts over time and as technology develops.

Senator Pocock said a legislated ban was needed to prevent the life insurance industry from undermining Australia’s public health outcomes.

“Genetic testing has been a game changer worldwide, helping people predict their future risk of cancer and to make plans to minimise that risk,” said Senator Pocock.

“The life insurance industry’s policies are preventing people undertaking genetic testing that in some cases can be life-saving. We stand to lose a lot as a nation if we continue to allow one industry to stand in the way of Australians taking full advantage of health technology to make informed decisions about themselves and their families.

“The industry has admitted that it needs to be regulated, but I don’t want to see one patchy scheme replaced with another. Only a total ban will provide certainty and stability. That is what has been done in Canada, and I urge the Government to replicate that ban here in Australia.”

In 2017, Canada passed a genetic discrimination law that prevents insurance companies from using genetic test results to determine coverage or pricing.

Ms Tink urged Parliament to give people the confidence they need to continue lifesaving medical testing. People were avoiding genetic testing due to concerns it could threaten their privacy and financial security, she said.

“People are being penalised for taking proactive steps for their health in accessing genetic testing that enables better management of conditions like cancer, severe childhood syndromes, and other genetic conditions, which many of us are carriers for.”

Ms. Tink characterized the situation as discrimination, and called on the government to legislate a ban on the use of genetic tests in life insurance.

The Australian Medical Association has also called for a legislated ban on the use of genetic testing in life insurance underwriting. AMA president Professor Steve Robson said that genetic discrimination in life insurance prevented people from undertaking genetic testing and taking part in genomic research.

“Having a legislated ban on the use of genetic test results is the only way to ensure Australians feel safe and confident their genetic results won’t result in discrimination,” Professor Robson said.

“A partial ban or a vague moratorium only leads to more uncertainty and deters patients from having live-saving genetic testing and participating in genomic research.”

Without these kinds of laws, Australians forwent critical procedures, Professor Robson said.

“It is overwhelming to me that we’re in a situation where people – acting through fear of financial penalty – might forsake testing that could save their lives or save the lives of their children and other realities,” he said. “This has to change.”

Jane Tiller, lead author on the Monash report, said a ban on legal discrimination would be the first step towards improvement.

However, “it would be nice” to have community-rated life insurance instead of risk-rated services to prevent companies from charging different premiums based on gender, religion, family history, or other factors, Dr Tiller said.

“The reason we’re trying to protect genetic results is because it’s a decision that people make … but they don’t decide whether to have a family history or not,” she said.

“We want to give people the confidence to have a genetic test when they need to have it, even if other things might happen in the background.”

With AAP